Etiquette

NWR: Thanks But No Thank You

I was trying to figure out which of my FB groups to pose this question to, but mostly they are full of ridiculous moms with no tact. Then it occurred to me to poke my nose in here because you guys won’t steer me wrong!

This is a question about Christmas gifts. Specifically for my infant. I had Baby Silver back in April and even though everything appeared normal during the pregnancy, she was born with a laundry list of life-long health issues. I will maybe elaborate elsewhere if anyone is interested. The birth and all of her challenges were/are pretty raw and traumatic still so I haven’t posted. 

So the thing is my family are really excessive in the gift-buying department. They are all packrats, and think that everyone must want as much *stuff* as they do. We moved to a very small house after the wedding, because we wanted to live in a certain area, on an acreage, and I have aspirations of minimalism. People have already bought her SO MUCH STUFF. And tons of it came from well-meaning aunts who shopped garage sales so I can’t return it. I don’t want the hassle right now of selling/rehoming/donating (our nearest place to even donate stuff is an hour and 15 minutes away...)

My one aunt literally bought me a second stroller because one of my other aunts said I would probably “want something smaller” than the one I PICKED OUT AND PURCHASED MYSELF. I don’t need another one and because of baby’s special needs we wouldn’t find umbrella strollers useful anyway. The one we have works perfectly. 

Thats the thing. My kiddo already has developmental delays at only 5 months (mostly gross motor so far, she seems ok in other areas). The toys people have bought her for
learning to walk she might not use until she’s 2, if ever. We just don’t know. I don’t want to be storing stuff for that long, especially because it hurts my heart that she can’t do things babies her age should be doing.

I want to politely ask people to stop buying her toys because we already have too many and she won’t be able to play with many of them for quite a while. We are also drowning in clothes because there are 3 slightly older girl babies in the family and I get loads of beautiful hand-me-downs. Our baby is having a gastrointestinal feeding tube placed on Halloween so her clothing also needs to be somewhat adaptive, and people don’t really realize that zippered sleepers are out and so are all onesies.

I put together a little Amazon wish list of a few useful things at different price points. I haven’t shared it with anyone yet, but with Christmas coming, would that be ok?  Most of the things we actually need are really $$$ (like a special bath seat for hypotonic toddlers and fuel for the endless trips to specialists 2 hours away) but I definitely don’t want to ask for money. She’s too young to really enjoy experiences.  I figured having something people could look at to see sort of what things she can actually use would maybe help stop the onslaught of items. 

Are there ways to handle this better?  I have very little sleep these days and I just feel overwhelmed so any advice is appreciated.  I don’t want to be rude or hurt feelings. 

Re: NWR: Thanks But No Thank You

  • It would be absolutely fine to do that! Most people have no clue what the parents of special needs children go through. Your aunts are well-meaning and want to give you what you actually need, so an Amazon wish list is a good way to tell them. I really appreciated that my SIL did this for my nephew, who has Down syndrome.  
    kwiksilverSTARMOON44ahoyweddingshort+sassy
  • MobKazMobKaz Chicago suburbs
    Eighth Anniversary 5000 Comments 500 Love Its 5 Answers
    member
    Hopefully I can return to address this further, but in the meantime, I hope staff are showing you that although some are expensive, there are clothing websites for adaptive needs.  Perhaps staff can also direct you to talented folks who can adapt "typical" clothes as well, or speak with parents who have had similar needs.

    https://www.kozieclothes.com/g-tube-and-medical



    kwiksilverahoyweddingshort+sassy
  • The Amazon wish list could help and is a totally reasonable way to handle this. I think most people would rather give you things that you and your child can use, especially if getting you things you can't use is going to make you sad. 


    image
    kwiksilvercharlotte989875ahoywedding
  • MobKaz said:
    Hopefully I can return to address this further, but in the meantime, I hope staff are showing you that although some are expensive, there are clothing websites for adaptive needs.  Perhaps staff can also direct you to talented folks who can adapt "typical" clothes as well, or speak with parents who have had similar needs.

    https://www.kozieclothes.com/g-tube-and-medical



    Thank you, yes I’ve definitely seen a lot of super cool adaptive clothing (we even have a local gal who has an Etsy shop and makes the loveliest things). I am handy with a sewing machine so I plan to modify the clothes we already have. Just going forward I don’t want to try to make a whole bunch of time for that. Most people just want to shop at Carters or other places that are cheap, so I’m going to just gently request that when choosing outfits they consider the fact that we need easy access to her belly or the clothes probably won’t get used much. 
  • Jen4948 said:
    Does your family have much knowledge about what you and Baby Silver are going through? If they do but are dumping inappropriate gifts on you anyway, I wouldn't even accept the gifts: "Thank you, but unfortunately, I'm not going to be able to accept these." Don't take the gifts when they give them out. 

    If not, I would give them the benefit of the doubt that they're just not understanding that Baby Silver's special needs aren't compatible with normal gifts and explain this to them. Maybe if they are actually told that the tons of gifts they're giving you are not only not helping your situation but aggravating it, they'll change what they're doing in a way that helps you.
    My family, for the most part, is in denial about her. They don’t really want to believe that she’s not going to quickly “grow out of it”.  My mom believes she’s going to be “cured” by stem cells... My husbands family is much better, mostly. 

    I think my one aunt did take the hint about the stroller, as I politely said “We don’t have space to store an additional stroller, and I‘m happy with the one we have” and she hasn’t mentioned us taking it again.  I didn’t want to just refuse gifts because I thought maybe that would be rude. 

    I just want a nice way to “head them off at the pass” before it gets all out of hand at Christmas, so I’m glad that sharing a wish list is ok.  I really don’t want to be getting jolly jumpers or exersaucers or any of that. It’s hard for people to understand that she’s got some physical limitations right now (like she’s 5 months and can’t hold up her own head yet so anything that involves being upright unsupported is not useful).

    I’m definitely finding my way in terms of becoming more firm with people (the learning curve of a special needs parent is steep, let me tell you) but I didn’t want to tip too far into being a jerk either, so I appreciate the feedback here. 
    ahoywedding
  • MesmrEweMesmrEwe
    Knottie Warrior 2500 Comments 500 Love Its First Answer
    member
    edited October 7
    At one point my SIL dumped SO many clothes on us I had SIX 60qt storage bins FULL one size and NONE of it was our/my style nor functional to our life and DH was happy to accept more.  I got Mommy shamed for saying "ENOUGH!  I don't want all this crap that doesn't fit our lifestyle! How do I get DH to stop bringing it home!" as-if I was ungrateful, but the reality was it was smothering..  I hate to say, I was so grateful for the day that DD became a different size than our niece and when it came to the little guy I outright had to learn to grow a pair and say "NO Hand-me-down clothes!" before he was even born...  You do have a place to donate/give away things are dumped on you, they're called your local Facebook online garage sale.  There are people in your area who can use this stuff especially for free.  However, the starting point is that it's o.k. to put a limit on things because you have considerations to your family and the size of your house.  A feeding tube doesn't mean they'll never get to play with a bouncer for example, OTOH, depending on the condition a different style of walker may be what you use, and you'll need to put your foot down.  

    As for the special needs factor, it'd probably help to get linked in with your local special needs families who have been where you're at (HopeKids is a great organization but there are many more) and also recognize, at 5mo, you're still in the thick of things, but that's not to say some things will be worth having down the road (plan your "exit strategy" for stuff as LO grows, there are places local to you, not 11/2 hours away or there's always FB groups and Craigslist).  Keep optimistic because this is a roller coaster ride and LO may surprise you!  There is a big difference in thinking that's denial vs. forward thought.  DS had some challenges in his early days such that the first 15mo were a blur of no sleep and doctor visits.  Keep an open mind (block sets you'll use eventually, extra playpen unless for GMs, not so much), but it's also o.k. to put your foot down especially on their garage sale shopping for you!
    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
    kwiksilverahoywedding
  • MesmrEwe said:
    At one point my SIL dumped SO many clothes on us I had SIX 60qt storage bins FULL one size and NONE of it was our/my style nor functional to our life and DH was happy to accept more.  I got Mommy shamed for saying "ENOUGH!  I don't want all this crap that doesn't fit our lifestyle! How do I get DH to stop bringing it home!" as-if I was ungrateful, but the reality was it was smothering..  I hate to say, I was so grateful for the day that DD became a different size than our niece and when it came to the little guy I outright had to learn to grow a pair and say "NO Hand-me-down clothes!" before he was even born...  You do have a place to donate/give away things are dumped on you, they're called your local Facebook online garage sale.  There are people in your area who can use this stuff especially for free.  However, the starting point is that it's o.k. to put a limit on things because you have considerations to your family and the size of your house.  A feeding tube doesn't mean they'll never get to play with a bouncer for example, OTOH, depending on the condition a different style of walker may be what you use, and you'll need to put your foot down.  

    As for the special needs factor, it'd probably help to get linked in with your local special needs families who have been where you're at (HopeKids is a great organization but there are many more) and also recognize, at 5mo, you're still in the thick of things, but that's not to say some things will be worth having down the road (plan your "exit strategy" for stuff as LO grows, there are places local to you, not 11/2 hours away or there's always FB groups and Craigslist).  Keep optimistic because this is a roller coaster ride and LO may surprise you!  There is a big difference in thinking that's denial vs. forward thought.  DS had some challenges in his early days such that the first 15mo were a blur of no sleep and doctor visits.  Keep an open mind (block sets you'll use eventually, extra playpen unless for GMs, not so much), but it's also o.k. to put your foot down especially on their garage sale shopping for you!
    Thank you for the advice. I definitely have used the FB option, but our local groups are public so my family can also see when I am trying to get rid of things. We live about 20 minutes from the closest small town and so I still end up having to run it places (I don’t really like inviting strangers out to where I live, especially because we are quite far from the closest neighbours). Truly I am not exaggerating when I say there isn’t much close to us.

    The feeding tube isn’t really the limiting factor. She has hypotonia and some other muscular and skeletal things.  She will be too big for something like a bumbo chair, for example, before she has the head control to use one safely.  The family members who are buying the stuff I don’t particularly need also never had children of their own, so I understand it comes from good intentions, but they also don’t really know that most of it is unnecessary.

    I made statements about them being in denial because when I share information about some of her diagnoses, they basically minimize or disregard it altogether. For example, baby has no olfactory bulbs. They didn’t form, it was discovered on one of her 3 MRI’s. She will have zero sense of smell and probably very limited ability to taste. And my mom was like “Well she might still grow them, you never know!”  It doesn’t work like that, and while I do try to be optimistic, I’m also a realist. My family is quite religious (I am not) so hearing about how God is going to heal her is vexing.  Yes, she will certainly surprise us, but I’m not pretending that shes going to be “just fine” as they keep insisting. I’ve read the limited information available regarding her genetic condition, it’s not particularly encouraging, I’m still trying to come to terms with a lot of it. I respect their faith, but I also don’t feel very heard when they blatantly deny that she’s special needs. 

    I definitely have plenty of support elsewhere, fortunately. Our Children’s Hospital has a very active parents group and there are loads of more specific FB communities that I have joined with good results. Our closest town is very small, we live in an extremely rural area, so there isn’t a lot available locally (our paediatrician, OT, PT,SLP, all of it is 1.5 hours away). We saw our local homecare and public health nurse weekly for a time and they referred us to the aforementioned city for basically everything, resource-wise.

    I don’t want to give the impression that I don’t think people are capable of selecting toys, etc for her. I have kept the nicer items, even though she won’t be able to play with them for a while. I just don’t want tons and tons of that kind of stuff, so I hope once I gently but firmly steer everyone in the right direction, it will be at least decreased. 
    MyNameIsNotahoyweddingshort+sassy
  • MesmrEwe said:
    At one point my SIL dumped SO many clothes on us I had SIX 60qt storage bins FULL one size and NONE of it was our/my style nor functional to our life and DH was happy to accept more.  I got Mommy shamed for saying "ENOUGH!  I don't want all this crap that doesn't fit our lifestyle! How do I get DH to stop bringing it home!" as-if I was ungrateful, but the reality was it was smothering..  I hate to say, I was so grateful for the day that DD became a different size than our niece and when it came to the little guy I outright had to learn to grow a pair and say "NO Hand-me-down clothes!" before he was even born...  You do have a place to donate/give away things are dumped on you, they're called your local Facebook online garage sale.  There are people in your area who can use this stuff especially for free.  However, the starting point is that it's o.k. to put a limit on things because you have considerations to your family and the size of your house.  A feeding tube doesn't mean they'll never get to play with a bouncer for example, OTOH, depending on the condition a different style of walker may be what you use, and you'll need to put your foot down.  

    As for the special needs factor, it'd probably help to get linked in with your local special needs families who have been where you're at (HopeKids is a great organization but there are many more) and also recognize, at 5mo, you're still in the thick of things, but that's not to say some things will be worth having down the road (plan your "exit strategy" for stuff as LO grows, there are places local to you, not 11/2 hours away or there's always FB groups and Craigslist).  Keep optimistic because this is a roller coaster ride and LO may surprise you!  There is a big difference in thinking that's denial vs. forward thought.  DS had some challenges in his early days such that the first 15mo were a blur of no sleep and doctor visits.  Keep an open mind (block sets you'll use eventually, extra playpen unless for GMs, not so much), but it's also o.k. to put your foot down especially on their garage sale shopping for you!
    Thank you for the advice. I definitely have used the FB option, but our local groups are public so my family can also see when I am trying to get rid of things. We live about 20 minutes from the closest small town and so I still end up having to run it places (I don’t really like inviting strangers out to where I live, especially because we are quite far from the closest neighbours). Truly I am not exaggerating when I say there isn’t much close to us.

    The feeding tube isn’t really the limiting factor. She has hypotonia and some other muscular and skeletal things.  She will be too big for something like a bumbo chair, for example, before she has the head control to use one safely.  The family members who are buying the stuff I don’t particularly need also never had children of their own, so I understand it comes from good intentions, but they also don’t really know that most of it is unnecessary.

    I made statements about them being in denial because when I share information about some of her diagnoses, they basically minimize or disregard it altogether. For example, baby has no olfactory bulbs. They didn’t form, it was discovered on one of her 3 MRI’s. She will have zero sense of smell and probably very limited ability to taste. And my mom was like “Well she might still grow them, you never know!”  It doesn’t work like that, and while I do try to be optimistic, I’m also a realist. My family is quite religious (I am not) so hearing about how God is going to heal her is vexing.  Yes, she will certainly surprise us, but I’m not pretending that shes going to be “just fine” as they keep insisting. I’ve read the limited information available regarding her genetic condition, it’s not particularly encouraging, I’m still trying to come to terms with a lot of it. I respect their faith, but I also don’t feel very heard when they blatantly deny that she’s special needs. 

    I definitely have plenty of support elsewhere, fortunately. Our Children’s Hospital has a very active parents group and there are loads of more specific FB communities that I have joined with good results. Our closest town is very small, we live in an extremely rural area, so there isn’t a lot available locally (our paediatrician, OT, PT,SLP, all of it is 1.5 hours away). We saw our local homecare and public health nurse weekly for a time and they referred us to the aforementioned city for basically everything, resource-wise.

    I don’t want to give the impression that I don’t think people are capable of selecting toys, etc for her. I have kept the nicer items, even though she won’t be able to play with them for a while. I just don’t want tons and tons of that kind of stuff, so I hope once I gently but firmly steer everyone in the right direction, it will be at least decreased. 
    Your family being able to see you giving the stuff away is a good thing!

    i think for your close family you can absolutely send an email and say, essentially, things are very difficult right now and receiving more stuff is making life more difficult for you, and that the gift you’d most like is thoughts/prayers/quality time or help buying the few things you do need on a list. 

    And then habr no guilt about literrally throwing stuff thats a buden in the trash. You’ve got enough going on. 
    short+sassyMesmrEwekwiksilvereileenrob
  • Start reminding them that God is guiding the hands of LO's care team and that her care team needs the positive energies directed their way for not only your LO but others' little ones as well!  Also, what @Starmoon44 pointed out if you've asked politely and they haven't gotten the hint.  Or you offer it back to them before selling it on the garage sale page...

    With the sense of taste/smell, look into synergistic sense where one sense "takes over" when another is absent.  It is really cool because if it's allowed to be fostered, LO can develop this sense pretty easily!  (It's actually pretty exciting stuff to study especially after experiencing it for taste/smell when I was a kid until the problem was rectified!)  
    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
    kwiksilver
  • Your family being able to see you giving the stuff away is a good thing!

    i think for your close family you can absolutely send an email and say, essentially, things are very difficult right now and receiving more stuff is making life more difficult for you, and that the gift you’d most like is thoughts/prayers/quality time or help buying the few things you do need on a list. 

    And then habr no guilt about literrally throwing stuff thats a buden in the trash. You’ve got enough going on. 

    I think this perfectly sums up responses to give to close family/friends.  Sometimes people just need to be beat over the head with it and it sounds like, they're there.  I also think it is fine to share an Amazon Wish List.  I never have any idea what my niece and nephew want.  Those kinds of lists are super helpful to me.

    I'm sorry to hear Baby Silver was born with so many health problems.  You all must already have so much heartbreak and so much on your plate.  I know it can't help to have your family in denial about the reality of the situation.

    I can empathize, though my situation is much less serious and frustrating. Still, I hope you can glean some coping mechanism ideas from my story.  One of my BFFs, who has known me since before I was diagnosed with Type I Diabetes over 20 years ago, does this to me.  Anytime she hears a story about someone who did this/that or took (insert supplement) and no longer has to take insulin, she excitedly passes it on to me.  At first, I knew it was just coming out of a place of love, albeit also ignorance.  And it was sweet and I didn't get upset about it.  But, FFS, I have now explained to her dozens of times over the years that many Type II diabetics do not need to take insulin.  But all Type I's do.  I've even explained why that is.  I've told her in no uncertain terms that, short of a medical miracle that doesn't exist yet, I will have to take insulin the rest of my life.  Period.

    But the stories keep coming.  Though they at least lessened after the first few years.  I've learned to just deal with it and blow it off.  I also keep the conversation shorter, by not going into the full explanation as to why the "whatever" won't work for me.

    Summary:  Since it's family, you'll probably want to go into more in depth conversations sometimes.  But I'd keep a few short phrases handy to deal with the day-to-day, "Pray and God conquers all" stuff.  Because I know it gets upsetting and frustrating to keep repeating the same "that won't happen" information over and over again.

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    STARMOON44kwiksilverMesmrEwe
  • Wow on the religious stuff! One thing I would be saying is, "This is the child God gave us, and she is perfectly whole to him. She may not be typical, and we're going to raise the child we have rather than the one we wish we had." I really hate it that people think there's something wrong with having a special needs child. 
    kwiksilverMesmrEweMairePoppy
  • maine7mob said:
    Wow on the religious stuff! One thing I would be saying is, "This is the child God gave us, and she is perfectly whole to him. She may not be typical, and we're going to raise the child we have rather than the one we wish we had." I really hate it that people think there's something wrong with having a special needs child. 

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  • MobKazMobKaz Chicago suburbs
    Eighth Anniversary 5000 Comments 500 Love Its 5 Answers
    member
    edited October 9
    @kwiksilver, as you and your families gain a greater understanding of Baby Silver's needs and interests, they will start to see that the term  "toy" is relative. For friends and family that prefer to buy practical gifts, such as a stroller, those may be the ones that seek to purchase a small foam wedge to help with supported sit, a variation of tummy time, or postural changes.  LO may love miirrors, toys with a sensory component, or toys with music.  I am sure the hospital staff will remind you that her oral stimulation will still be important.  Teething mitts are a great way to encourage hand to mouth "action" especially if grasp may be an issue for a bit.  Those are not inexpensive.  But they are cute and functional and bring babies joy.  Family will just need to reset their mindset on what might be considered a toy for LO.

    When you have a chance to adjust and learn more about the needs of LO, ask the therapists to recommend toys and adaptive equipment (such as the wedge) that may help her to accomplish motor milestones.  The baby industry is getting much better about making many baby items "space saving", foldable, or collapsible. 

    Prayers for you all as you navigate this parenting world!

    **(I was a speech/developmental therapist for the 0-3 population in my "first" professional life.)



    MesmrEweShesSoColdshort+sassy
  • I think everyone gave good advice. I’d share the list and start refusing unhelpful gifts and toys. 

    sending you lots of hugs. She’s beautiful and you are doing an amazing job. You can see how happy she is <3
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    kwiksilver
  • ShesSoColdShesSoCold bend over and I'll show ya
    Moderator 5000 Comments Fifth Anniversary 500 Love Its
    mod
    She's gorgeous, kwik! Those eyes! :)
    Image result for someecard betting someone half your shit youll love them forever
    kwiksilver
  • She's adorable!   
    kwiksilver
  • What a happy, content face she’s making for mommy <3 I love PP advice, sending positive vibes 
    kwiksilver
  • MairePoppyMairePoppy Connecticut
    Moderator Eighth Anniversary 5000 Comments 500 Love Its
    mod
    She's adorable, love those cheeks!

                
    kwiksilver
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